Since my latest venture becoming a YouTuber, I have been meaning to find time to watch various other relevant HSP things in order to report them here.
Finding that time seems to be somewhat challenging at the moment, so I am putting the various YouTube links here, and I'll come back another time to report them. There are two different channels which I mean to look at first:
ERN RND
The European Reference Network on Rare Neurological Diseases (ERN RND) have run a series of webinars over the summer, several of which are relevant to HSP. Each webinar was broadcast on a separate day.
There are five that caught my attention, which I have put the titles and links to in this table below.
|
Title |
Link |
|
Environmental
modifiers in Hereditary Spastic Paraplegia |
|
|
Gait
rehabilitation in people with HSP |
|
|
How to assess
and manage spastic gait in rare diseases? |
|
|
Hereditary
Spastic Paraplegia (HSP) clinical disease course |
|
|
Treatment of
spasticity in HSP |
There's about 5 hours of watching here. They also have videos on other conditions than HSP, and you can see the full details on their channel: https://www.youtube.com/channel/UCLpEdEyhGnQpdmLLzqNXkTg/videos
SP Foundation
The Spastic Paraplegia Foundation ran their annual conference on-line, and have uploaded videos of this onto their channel. Their conference ran over three days, and I have included the relevant links into the table below:
|
Title |
Link |
|
SP Foundation:
Virtual Conference Day One June 26, 2020 |
|
|
SP
Foundation: Virtual Conference Day Two June 27, 2020 |
|
|
Path to
Improve Upper Motor Neuron Health |
|
|
Genetic
Topics in HSP & Related Diseases |
|
|
HSP:
Understanding What's Wrong So That We Can Fix It |
|
|
Research
Advances in the HSPs |
|
|
A Multimodal
Strategy to Finding a Cure for an Ultra-rare Disease |
There is a video each for days one and two of the conference, and (as far as I can tell) the third day has been split into separate presentations. Overall there is about 9 hours watching here as well. They also have other videos on their channel: https://www.youtube.com/c/SpasticParaplegiaFoundation/videos
This includes videos from the past three years, and it is worth watching the Q&A with Dr Fink, as these give some great pieces of information.
(p.s. I dont know what happened to October, all of a sudden we have arrived in November! I was planning to put this post up in late October, so that my survey launch post got a long time as most recent post! It makes Oct 2020 only the second month when I have posted just the once - April 2011 being the other one)
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